Caregiving: I’m frustrated and exhausted.

Posted by dem2301 @dem2301, Jun 18, 2019

My post tonight is nothing but venting and a bit of poor me. I’m caring for my husband with Parkinson’s and Lewy body dementia. His daily care demands are exhausting some days besides taking care of our home, bills etc. and attempting to take care of myself which I’m not really doing very well. If I would have the listened to the nurse of 37 years(meaning me) I would have advised myself to go to the emergency room after being sob of breath and having chest pressure but no I needed to make supper, do meds, blood sugars, help him to the bathroom and be at his beck and call. I do feel better now but am so tired and I know he will call me at least twice tonight to help him. I know this sounds pretty mixed up but I just need to vent. Unless your living this no one really wants to listen. Including my own kids. It’s impossible to even carry on friendships anymore, I’m unavailable when I’m invited which is becoming less frequent all the time
I don’t leave him anymore unless it’s to run a short errand. I had breast cancer and treatment last summer, I never skipped a beat. The day after surgery I resumed my daily care routine, drove 40 miles one way for radiation and still cared for him. I had carpal tunnel surgery in may, came home and took care of him. Like I said there is a bit of poor me involved tonight..i better quit for now. Thanks for letting me vent.

@dem2301

First of all, thank you for the support and encouragement. Yesterday was a really hard day and I was absolutely exhausted. I've read the comments about hospice. When I feel along with his doctor input hospice will certainly be a major consideration. I just don't think we're there yet. The reason I'm unable to vent to my children is because they really want me looking for a care facility and again I'm not ready for that. I worked as a nurse for 37 years and feel I'm providing him with better care here at home. Some occasional in home help will be my next step. He's resistant to that idea but for my health I need to. I feel stress and anxiety are a big factor in cancer diagnosis and progression. I'm fearful of breast cancer recurrence if I don't get my emotional health back in check. Our oldest daughter died of lymphoma 6 years ago and she lived an environment of unrelenting stress and feel the reccurance she suffered 5 years after her original diagnosis played a part. Today is a better day, he noticed some flowers I arranged and said they where so pretty. The little things mean a lot.

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@dem2301 I’m sorry for the extremely difficult times you are having. You are a nurse, but even nurses work shifts, not 24 hours! Yes, he probably is getting excellent care, but the cost to you may just be too much. Talk with your local hospice and/or nursing homes. They may offer respite care or short term care. Respite care is usually a weekend or while caregiver is out of town. See what they can offer. And, in home help would be a wonderful next step. The helper could manage your husband 1-3 times a week while you get a much needed nap.
Have you ever talked with your husband about an assisted living/nursing home? Would he be able to have the conversation? Maybe he would feel better knowing that your not wearing yourself out. Maybe he, too, needs friends and activities. You don’t need to do it all! The reply from @vickys was very helpful. Keep in touch because we worry about you

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@shirleymac

I can truly sympathize, even though my situation is different from yours (dementia and a stroke). I find myself sighing a lot, even when I don't need to. I am so frustrated with the total lack of support or understanding from my husband's family. I feel very trapped some days and find it difficult to keep up with friends, much less see them. I would love to take a break away from my husband, just to regroup, but this seems very unlikely/impossible. So far, my health is holding up, but I am on more meds than before and some days that is not enough. I guess I am venting, too, as well as sympathizing. Try to find some time for yourself. I go to book club about once every 6 weeks. That's not much, but it helps. I take our dog for a walk at least once a day. I'm out, but nearby. I hope you can find help with your caregiving. We all feel overwhelmed, sometimes, and other caregivers understand. Feel free to vent any time!

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@shirleymac vent all you want as often as you want! It can be the best medicine! I know that caregiving is exhausting, frustrating, and stressful. That’s why we’re here—we can listen and maybe give suggestions. And, thank you for your suggestions

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I’m a caregiver, and I lurk more than post. A vented frustration is good input for me. I may not add to what is being said, but your posting helps me, and hopefully others. Thank you

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@klaken

I’m a caregiver, and I lurk more than post. A vented frustration is good input for me. I may not add to what is being said, but your posting helps me, and hopefully others. Thank you

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Hello @klaken Glad you are here with fellow caregivers here on Mayo Connect. I know how intensely isolating and overwhelming caregiving can be for every one of us! My favorite venting activity was an old feather pillow on our sofa, which many nights became my punching bag. I cried into that pillow more often than I cried in my pillow in high school and I did that A LOT back then!

Often times I find myself saying things outload these days because just letting it out — even if only the walls and the dog hear — helps me.

I hope it is sunny and lovely wherever you are today!

Cheers to you and all caregivers!

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@klaken

I’m a caregiver, and I lurk more than post. A vented frustration is good input for me. I may not add to what is being said, but your posting helps me, and hopefully others. Thank you

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I lurk!
Vented frustrations and stories let me know I am not alone. And help me understand.
I’m thankful to know there is a community out there….

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@vickys

I lurk!
Vented frustrations and stories let me know I am not alone. And help me understand.
I’m thankful to know there is a community out there….

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…and we are thankful YOU are here @vickys Strength in numbers and all that!

Cheers to YOU!

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After a week of increasing confusion, weakness and a productive cough I managed to get my husband to the Doctor, it certainly wasn't because he wanted to go.The chest x-ray was clear but he has a UTI. Hopefully the antibiotics will work fast and he returns to his baseline, his history however tells me he will stabilize but there will be a decline.Hope everyone has a good weekend, it appears I have my work cut out for me.
.

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@dem2301

After a week of increasing confusion, weakness and a productive cough I managed to get my husband to the Doctor, it certainly wasn't because he wanted to go.The chest x-ray was clear but he has a UTI. Hopefully the antibiotics will work fast and he returns to his baseline, his history however tells me he will stabilize but there will be a decline.Hope everyone has a good weekend, it appears I have my work cut out for me.
.

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@dem2301 A UTI can cause some strange manifestations, and the symptoms you described seem to be common among them. Take deep breaths. I imagine the antibiotics may take a day or so to start working, but some of the more troublesome signs may go away quickly. It's frustrating, isn't it? We're here for you.
Ginger

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@dem2301

After a week of increasing confusion, weakness and a productive cough I managed to get my husband to the Doctor, it certainly wasn't because he wanted to go.The chest x-ray was clear but he has a UTI. Hopefully the antibiotics will work fast and he returns to his baseline, his history however tells me he will stabilize but there will be a decline.Hope everyone has a good weekend, it appears I have my work cut out for me.
.

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Hi @dem2301 I am sorry to read you had a tougher week than usual. Those days of having some additional healthcare issue piled on top of everything else are especially challenging to caregivers for sure!

I realize every patient is different, but I know in my MILs situation with her dementia every medical intervention she had, no matter the cause, resulted in a decline in her abilities. It is interesting to me to read you are seeing the same phenomenon in your husband.

I agree with @gingerw that it is amazing what antibiotics can do so quickly for some infections. My wife was prone to UTIs during her illness and she used to joke all I had to do was show her the antibiotic pill and it would start to get better 🙂

I hope your weekend unfolds into a good one and the sun is shining wherever you are today.

Strength, courage, and peace!

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@IndianaScott

Hi @dem2301 I am sorry to read you had a tougher week than usual. Those days of having some additional healthcare issue piled on top of everything else are especially challenging to caregivers for sure!

I realize every patient is different, but I know in my MILs situation with her dementia every medical intervention she had, no matter the cause, resulted in a decline in her abilities. It is interesting to me to read you are seeing the same phenomenon in your husband.

I agree with @gingerw that it is amazing what antibiotics can do so quickly for some infections. My wife was prone to UTIs during her illness and she used to joke all I had to do was show her the antibiotic pill and it would start to get better 🙂

I hope your weekend unfolds into a good one and the sun is shining wherever you are today.

Strength, courage, and peace!

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Scott, Good to see you are still enjoying the jokes and memories. Since that is all we have left, it helps to recall them often. Keeps our loved ones with us. My husband is going on 2 years at the care center with alzheimer's and vascular dementia and sometimes I get a smile or he will remember a fun time from his truck driving days. It all helps. Hope the sun is shining and the weather warm where you are.

rutucker

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My favorite quote is that you're no good anyone else unless you're good to yourself first. Sounds like you need a break…some visiting Angels or a healthcare facility. A dear friend wrote a book on his experience as caregiver with his wife's Lewy Body Dementia. "The Other Me's " Available online.

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@IndianaScott

Hi @dem2301 I am sorry to read you had a tougher week than usual. Those days of having some additional healthcare issue piled on top of everything else are especially challenging to caregivers for sure!

I realize every patient is different, but I know in my MILs situation with her dementia every medical intervention she had, no matter the cause, resulted in a decline in her abilities. It is interesting to me to read you are seeing the same phenomenon in your husband.

I agree with @gingerw that it is amazing what antibiotics can do so quickly for some infections. My wife was prone to UTIs during her illness and she used to joke all I had to do was show her the antibiotic pill and it would start to get better 🙂

I hope your weekend unfolds into a good one and the sun is shining wherever you are today.

Strength, courage, and peace!

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I was always my father's caregiver for several years. The dynamics are different this go around though. I have 6 brothers and sisters. They all helped according to there abilities so we could keep him in his home for as long as possible. I also noted the decline after each illness, intervention etc with him.one of his doctors told me that for each decade of age it takes a week to recover after a hospitalization or serious illness. It's something to think about.
I'm anxious for my husband to feel better. Maybe tomorrow will be better. Thank you everyone for the support.

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@rmftucker

Scott, Good to see you are still enjoying the jokes and memories. Since that is all we have left, it helps to recall them often. Keeps our loved ones with us. My husband is going on 2 years at the care center with alzheimer's and vascular dementia and sometimes I get a smile or he will remember a fun time from his truck driving days. It all helps. Hope the sun is shining and the weather warm where you are.

rutucker

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You hit on a great point, @rmftucker A smile can truly make a caregiver's day for sure! It doesn't take much to make us then smile in return!

We had our first great summer day today! Hit 77 and the sky was totally blue without a cloud! Then about 5 it changed and now is raining lightly. But we take what we are given in the weather department for sure after the winter we had!

Cheers to you!

Liked by debiobrien

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@dem2301

I was always my father's caregiver for several years. The dynamics are different this go around though. I have 6 brothers and sisters. They all helped according to there abilities so we could keep him in his home for as long as possible. I also noted the decline after each illness, intervention etc with him.one of his doctors told me that for each decade of age it takes a week to recover after a hospitalization or serious illness. It's something to think about.
I'm anxious for my husband to feel better. Maybe tomorrow will be better. Thank you everyone for the support.

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Good evening @dem2301 Yes, indeed, 'maybe tomorrow will be better'. Hope, coupled with love, is often the fuel that keeps caregivers operating, running at full tilt, and loving with all our hearts!

So nice to hear you have supportive family around! I imagine that can be a huge help and can lighten the burden on occasion.

I wish you the best and want to thank you for being here with all the other caregivers on Connect! Caregiving can be so intensely isolating and overwhelming, support is crucial for sure!

Strength, courage, and peace!

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I am also a care giver so i can sympathize with all of you. I watch over 2 ladies that are both 91 almost 92 as they are my mother and her twin sister my aunt.

My mom is still independent and can take care of herself but my aunt is more needy. my aunt has difficulty getting around , walking and taking care of herself. between me and mom we do our best to take care of her, run errands, take to many doc appts and sometimes cook. So far i am not a "live in " for either of them.
i sold my house in another county 2 years ago and now live 10 min form them kin a rental house just to be near and no one else in the family was interested in doing. the others all moved away to other states so its just me.
I have always watched over my my mom entire life but my brother and sister have lived life for themselves not for mom.
I took care of my dad till he passed i n 2010 he had dementia. we had to put him in a secure facility the last few years because he became violent and was hurting me and my mom. he passed in the ER at waterman of cardiac failure.
I can understand the comments others have made about how the stress cam make you sick as i have gotten very ill over the past few years since i started the care giving.
Severe gastric issues developed fibromyalgia, depressions, anxiety and don't want to get out of bed every morning i wake up due to body wide pain and illness. i feel myself getting sicker everyday. I also have bad PTSD from many years of abuse so thats hard to deal with. soemtimes i just want to run away.

For me so far the biggest stress is knowing my mom who i treasure dearly is almost 92 and he days are numbered and i will lose her one day in the near future and that depressed me so much. i get consumed with the thought some days. I don;t know what i will do when i lose her as i spent my entire life taking care of her and watching over her as my dad was not a good father or husband as he was always an abusive man.
Im 64 and never married and no kinds and live alone and don't have much of a support system as i don't have a relationship with my brother as he is also abusive and barely a relationship with my sister as we were never close growing up and she left home very young and she is 5 years older than me so i was very young when she left and don't have many friends as i don't get out much anymore due to being in so much pain and sick all the time so i know i will be lost when i lose my mom.
so i understand the isolation of the others of you all and the stress this all causes and the physical illness that come about. i'm a wreck. i was a cop for over 20 years till i lost my career due to severe injuries in the line of duty and this is harder than my job ever was. thanks for listening to anyone who reads this post and my god bless all of you going thru this and give you strength and peace and comfort.

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